Medical Sexism - being heard while female

My heart attack was in March of 2009. Seven months later, in October 2009, I jumped into women's heart disease advocacy via attending the WomenHeart Science & Leadership Symposium at Mayo Clinic in Rochester, which is a five-day intensive training program for women with heart disease--they take around 60 women each year (all of whom have some form of heart disease), out of a large number who apply.

With the training we receive at the Symposium, we turn our passion and our personal experiences of heart disease into real-world skills in advocating, educating, and supporting women with or at risk of developing heart disease. We leave the Symposium as patient-experts, equipped to become community leaders in women's heart disease awareness.

Since mid-2009, I have staffed information booths at health fairs, attended events in people's homes, in churches, in country clubs; I've run a support network, I support women with heart disease online, I write a blog. While I'm not an old hand, I'd say I'm fairly comfortable with my women's heart disease advocacy--how to do it and what my own particular strengths are.

However, I'm a babe in the woods when it comes to the broader patient advocacy movement, as I wasn't aware, until around six weeks or so ago, that an organization like the Society for Participatory Medicine existed. Chalk it up to an intense focus on my particular issue, if you will. But the fact is, I have only very recently discovered this broader movement to foster engaged, educated patients who are true partners in our own healthcare.

For years now, the folks in this movement have been urging healthcare professionals to listen to patients, to see us as a valuable resource. Or as my new friend e-Patient Dave says, "Let Patients Help."

I want to be an active, engaged, educated, empowered patient. I have educated myself, I am active in my care, I speak up about my needs. I'd give myself a solid "B" on my ability to be an e-patient. Doing pretty well, still room for improvement.

Imagine my dismay upon hearing that one thing I can't change -- my gender -- is held against me:

'Medical Sexism': Women's heart disease symptoms often dismissed

From the article: "Cardiologist Dr. Adam Splaver says a symptom like shortness of breath is too often dismissed as anxiety among women.

'In training, we were taught to be on the lookout for hysterical females who come to the emergency room,' said Splaver."

I am thankful, in this season of giving thanks, that the emergency room staff took my classic heart attack symptoms--chest pain that radiated down my left arm and up into my neck and jaw, nausea, and cold sweats--seriously and treated me appropriately, even as they told me that I was too young and too female to be having a heart attack.

And even as they wrote in my chart, but didn't say out loud to me, that it was possible that I was just suffering from "anxiety," they did an EKG, drew blood, did a chest X-ray, and gave me a nitro patch and an aspirin.

As they talked about esophageal spasms or acid reflux, they admitted me overnight for observation, just in case. When the second round of bloodwork showed up with elevated troponins, a stunned-looking doctor came into my room to give me the news that I'd had a heart attack. In the back of my mind, I was not surprised. I wouldn't have insisted that my husband drive us to the ER if I was just feeling a little "anxious" (yes, I've had a panic attack before, no, this was something entirely different).

I am reminded of my fun with chicken pox--not shingles--as an adult, around 12 years ago. Growing up, neither I nor my siblings had ever had chicken pox. When I worked in a hospital in the mid-1990s, one of our interns from overseas got it and as a result, all of us in the office who thought we'd never had it had to troop over to the hospital's Infectious Diseases clinic and give up a couple tubes of blood to be tested. My sample was the only one that came back marked "No varicella antibodies." Further proof that I hadn't even had a sub-clinical case as a baby.

Fast-forward to late 1999, after Thanksgiving. A small, strange bump appeared on my chest. After a couple more appeared on my torso, I wondered if it could be chicken pox. I showed my female boss, who'd raised two children. She thought they looked suspiciously like early-stage pox, so I went to my family doctor. They said "impetigo" and sent me on my way, all of my protestations that by the way, I've never had chicken pox seemingly going in one ear and out the other.

As more and more appeared, my certainty that it was chicken pox, and NOT impetigo, grew. I went back to the doctor. This time, they finally listened. They put me on Famvir, which did no good but might have if they'd prescribed it when I first showed up--and told my husband to watch for possible signs of pneumonia or meningitis, had me coming in to the clinic almost daily so they could check me themselves, and even once pulled in a med student working there, to look at me, as mine was a "very involved case" (IOW, I was a medical curiosity for the first, but not last, time in my life).

They never once apologized for not listening to me. Sometimes I have those "going back in time" fantasies. In this particular one, I would grab my physician by the lapels and ask him to look me in the eyes as I said slowly and clearly, "I HAVE NO VARICELLA ANTIBODIES."

I am reminded that the "P" in SPM stands for "Participatory." To me, that means a give-and-take, a conversation, where both parties listen to each other.

I'm talking, but who's listening?

HIPAA, Heart Disease and TMI

Yesterday, I and another heart disease advocate worked all day at at table for WomenHeart, handing out information on women's heart health. My friend and I are both heart disease survivors.

At one point, a woman came up to our table and started telling me her story of postpartum cardiomyopathy. I said to her, "You really need to talk with _______," my fellow patient here; she's had post-partum cardiomyopathy, too."

My friend wrapped up the conversation she was having with another visitor, and I put the two of them together. I stood back and watched while they traded stories, exchanged contact information, and made a real connection with each other, since they had a shared diagnosis.

As our newest heart-sister walked away after hugging my friend, she said how great it was to be able to talk to someone else who'd been through the same thing.

Did I break a HIPAA rule by telling this new lady about my friend's diagnosis?

I don't know, but what happened yesterday wasn't unusual, at least in the patient communities that I participate in.

As longtime readers know, my own diagnosis is idiopathic SCAD (spontaneous coronary artery dissection), my right coronary artery repaired with six overlapping drug-eluting stents (DES). If you're curious, I can even tell you the make and model of these tiny bits of metal in my body -- Xience V, by Abbott Labs.

No one knows what causes SCADs, and there's no standard treatment. Some people who have dissections have a connective tissue disorder, some women are pregnant or have just given birth, and others, like me, just have them for no reason that we know of--that's the idiopathic category. As for treatment: some people get stents, some have bypass surgery, some are medically managed, and some get no fix (aka, the "watchful waiting" strategy).

When a new person shows up on the heart disease message board, sometimes one of us will say, "Oh, so-and-so has the same thing," same diagnosis, same treatment, same experience with side effects, whatever.

And we don't think anything of it; what we're doing, in our eyes, is accurately connecting patients with other patients who have something in common. Especially when we know that the one we're referring to may not check the message board very frequently anymore, we'll send an email: "So-and-so is new, has diagnosis/treatment X, and I know she'd like to hear from someone else in the same situation."

At Mayo's Social Media Summit a couple of weeks ago, there was a lot of discussion around HIPAA, patient disclosure, privacy, and keeping control of privileged health information. Which has me wondering, have we been inadvertently violating the law all this time and didn't realize it?

If so, how can we continue to support each other, while staying on the right side of HIPAA? Is HIPAA even concerned with patient-to-patient sharing, like we've been doing?

I honestly don't know. I'm freely admitting my ignorance on the subject and would love to hear various perspectives on the subject.

BMI alone is not a good predictor of heart problems

New study out illustrates that Body Mass Index (BMI) alone is not an accurate predictor for cardiac problems:

http://www.ncbi.nlm.nih.gov/pubmed/21397319

They looked at medical information for over 200,000 people.

Their conclusion?

"BMI, waist circumference, and waist-to-hip ratio, whether assessed singly or in combination, do not importantly improve cardiovascular disease risk prediction in people in developed countries when additional information is available for systolic blood pressure, history of diabetes, and lipids."

In plain English: look at the blood work, not the shape of the person. If your numbers--blood pressure, blood sugar, and cholesterol--are good, don't let medical people browbeat you with where you are on the BMI chart.

Now I'm not saying don't eat well and don't exercise, but if you're living a healthy lifestyle and the numbers back you up, don't let anyone make you feel bad if you're not where the BMI says you should be.

That's how I'm reading these results, anyway.

And note, this study wasn't funded by a drug company--it's always important to read the "funding" or "supported by" statements on these things. It was funded by the British Heart Foundation (similar to the AHA in the US) and the UK Medical Research Council (another nonprofit). So there's no hidden shilling for a product.

Still Alive and Kicking

My husband is 43, I'm 42 (will be 43 in a few months). This is us:



Yes, I had a heart attack almost two years ago--about three months after the picture above was taken, in fact.

Yes, counting multivitamins, I'm on about 8 pills/day.

Yes, I wear a medical ID bracelet now.

Yes, I try to be in bed by 11:30pm most nights, especially worknights.

Yes, if I'm in a phase of being serious about my workouts, I hit the gym most nights after work, which does put a crimp in the ol' social life.

Because I'm not home and presentable until around 8:30pm, and I haven't even had supper yet.

I also don't want to go out to places that allow smoking, because my hair is tailbone-length, and washing smoke out of all that hair, then waiting for it to dry, takes a long time (using a dryer on it would fry it).

So that limits what I'm even interested in doing on a weeknight--no bands playing in smoky clubs, for example. On a weekend, it's easier for me to deal with getting all the smoke out of my hair and clothes. During the week, I just don't have time for that mess. Plus, I don't smoke, and I don't like breathing smoke. If there's a good enough reason, I'll put up with it, but really? I plain don't like it.

When I do go out, I don't drink more than two beers, at most. I can't remember the last time I was well and truly drunk, complete with hangover. Eventually I figured out that the cost-benefit wasn't working for me: the few hours of being buzzed weren't worth spending the entire next day feeling like someone was pulling out every single hair on my head, individually.

On the other hand, I'm *also* not gumming the 4pm K&W early-bird special, then hopping into my long granny flannel nightgown, taking my teeth out, pulling up my Depends, and going to bed by 7pm.

So what do I do on my weeknights after work and gym?

Sometimes I go out to events at bookstores: author appearances, book signings, that sort of thing.

I host a monthly book club meeting.

Once every two months, I host a women's heart disease support group.

My husband and I go out to dinner with friends.

We have board games nights.

A lot of times when I get home from work and the gym, after my shower, if I'm not going back out again, I'll get into whatever I plan to sleep in: usually lounge pants and a comfy shirt.

While I may be in my jammies by 8:45pm, by no means does that mean I'm going to bed at 8:45pm.

What it means is that I've gotten comfortable in my own home, and I'm relaxing after work and working out.

I have heart disease--but I'm still above ground. And I plan to stay that way.

I did it!

I was 40 years old and training for a super-sprint triathlon when I had my SCAD (spontaneous coronary artery dissection) and heart attack in March of '09.

I don't smoke, I'm not diabetic, I don't have clogged arteries, don't have high blood pressure, and don't have sleep apnea. In August of '08 I'd started a diet and exercise plan and had dropped around 20 pounds, then in January of '09 I started training for my first triathlon.

So I don't know who was more surprised by my heart attack, the doctors or me. They fixed me up with six stents in my right coronary artery and after a week in the hospital sent me on my way. I did 12 weeks of cardiac rehab then got clearance to start training.

There have been several challenges and obstacles this year, mainly my mother-in-law's diagnosis of lung cancer, her declining health following alleged successful tumor removal surgery, and then her death in April this year.

Two of our three cats also developed health problems earlier this year, and we had to put them to sleep last week.

With all of that, it's been difficult at times to muster the mental and emotional energy to get to the gym, to get on the bike, to wake up early on Saturdays and go to the pool.

BUT I DID IT!

Yesterday I competed in and finished the Ramblin' Rose Triathlon in Chapel Hill.

Nineteen months after my heart attack, I am now a triathlete. Some people in my family doubted that this day would come, but it has. :)

My awesome husband cheered me on and took pictures, some of which you can see here:
http://www.flickr.com/photos/paulcory/sets/72157625136381120/with/5069723190/

So if you're just out of the hospital, if you've just been diagnosed, if you're still at the scared and confused stage, this is me telling you that you CAN persevere, you CAN still follow your dreams.

Yes, I have heart disease. I also now have a triathlon finisher's medal. :)

Dragon*Con, Blood Thinners, and You: Or, Where Did All of These Bruises Come From?

Most of you have heard me talk some about how I really don't fit the media stereotype of the heart attack survivor—the most obvious thing being that I'm not a 60-70 year old, type A personality male. I'm a 42-year old woman (40 when the heart attack happened) who doesn't have high blood pressure, doesn't smoke, isn't diabetic and doesn't have clogged arteries. I'm overweight but had been dieting and exercising for several months and taken off around 20 pounds when I woke up that morning with crushing chest pain.

I'm also unusual in the heart disease community because I'm, well, let's face it: I'm a geek. I'm a nerd. I was the kid in high school who was in the AP/advanced classes. I took one of the first computer processing classes offered at my high school (on TRS-80s, no less)—we spent a semester on BASIC, then spent a quarter split into small groups to write a program in COBOL. When my world history teacher did review sessions at the end of the semester and gave extra credit for correctly-answered questions, he wouldn't let me play—said it would skew his grading curve too badly. I wear glasses.

I have volunteered at and run science fiction conventions in my home town. I play role-playing games (Champions/Hero System, if you must know). I love Star Trek, Babylon 5, Futurama, Firefly/Serenity, Farscape, the new Battlestar Galactica, and more. My favorite authors write series you've probably never heard of: Honor Harrington, Skolian saga, Saint Germain chronicles, Deryni series, Liaden universe, Technic civilization. At my day-job, I work for a science fiction publisher. I read comics and love comic-book characters, with Batman being a particular favorite.

My husband and I spent Labor Day weekend congregating with our tribe, our people, our fellow geeks and nerds. Maybe you've heard of San Diego Comic Con? The event we attended this past weekend is similar, but is run by a hardworking corps of volunteers and takes place in Atlanta every year: Dragon*Con.

Some people jokingly call it "Nerdi Gras," and that's as good a quick description as any. You'll find people of all shapes and sizes in costumes of all types, from cartoon characters to the latest sf TV shows—one family came as the characters from Scooby Doo, someone else dressed up as the Witch King from Lord of the Rings, there were several Batmans and Supermans, and the group that won the Sunday night masquerade did steampunk versions of the X-Men. Lots of people, including me, have no talent at costuming; we just wear comfortable clothes and admire the skill and chutzpah of the people who do take the time to dress up.

There are 37 tracks of programming, so there's always something to do—usually two or three things are happening at once and you want to go to all of them, so you have to make hard choices: Jim Butcher autograph session, or discussion on the lasting impact of H.P. Lovecraft, or Q&A with the cast of Firefly?

Somewhere around 50,000 people streamed into downtown Atlanta to take part in the con (short for "convention," not "con game"), and I do mean "take part," because the people become part of the experience—via costumes, via interacting with panelists, meeting fellow fans while waiting in line, hosting or attending parties, taking pictures. It's an interactive experience. Wear comfortable shoes.

If you're at all crowd-phobic, you may need to take steps to make sure that you can fully enjoy your weekend at Dragon*Con. The public areas of the hotels hosting the Dealers' rooms—where you'll find everything for sale from leather corsets to T-shirts with snarky sayings to dice in all colors, shapes and sizes—and large events like concerts and some of the really popular panels turn into wall-to-wall people, especially on Saturday.

As a short woman who apparently projects an invisibility shield, people were bumping into me, stepping on me, and cutting me off all weekend. Even when my 6' husband was holding my hand, we'd still get separated. It seriously made me wish I had a taser.

That said, once I'd fought my way through the crowds, ultimately I enjoyed whatever event or panel I went to.

Then the bruises started showing up.

This is the legacy of having a heart attack: taking Plavix and a full-strength aspirin every day. Sometimes a bruise shows up and I know exactly what happened. "Oh, I banged my shin on the coffee table last night in the dark." Other times, a bruise'll appear and I'll have no idea what I did; maybe someone looked at me cross-eyed.

Most of the ones incurred from the full-contact sport of getting from place to place at Dragon*Con aren't visible; they're on my legs and feet, with one on the last two knuckles of my right hand that falls into the "I have no IDEA where that came from" category.

If you're on blood thinners, arnica gel is your friend. It really does help the bruises fade faster. It won't disguise them if you're self-conscious about them where they show (next post: why Capri pants and 3/4-sleeve shirts are a Plavix-girl's friend), but they will disappear quicker than they would otherwise. I spent time every morning and evening at D*C putting arnica on my battle-scars.

As a heart disease patient, I also modify the standard travel-size emergency kit to include a list of current meds, emergency contact info, nitro pills and baby aspirin, and of course my trusty tube of arnica gel. You can get it at most organic food co-ops and also places like Whole Foods.

This is a good time for me to remind people to get and wear a medical ID of some sort—bracelet, necklace, there are a TON of options in every style, color, and price range, and there's no excuse to not wear one. Many times at Dragon*Con, my husband and I were attending different events in different hotels. Depending on your carrier, cell phone reception in the various host hotels ranged from OK to decent to horrible. If something had happened to me, it would have taken some doing to track him down, but thankfully I was always wearing my medical ID bracelet.

One thing that happened over the weekend that meant a lot to me was getting to meet Kevin Sorbo. If you don't know his work, he's an actor who played Hercules in the show Hercules: The Legendary Journeys, and Xena: Warrior Princess, as well as Capt. Dylan Hunt in Gene Roddenberry's Andromeda.

Right after my heart attack, I was, to put it mildly, freaked out and scared. The heart attack was in late March and my birthday is in early May; for my birthday that year I received a lot of Amazon.com gift certificates. I pooled them together and bought the box set of Hercules.

I was only out of work for a couple of weeks, then it was back in the saddle, and I started up cardiac rehab a few weeks after getting out of the hospital.

It was wonderful to come home in the evenings and be able to put on an episode of Hercules and get transported to another place and time for awhile and not have to think about what had happened to me. Not have to look at the scar on my wrist where they stuck an arterial line my third night in the hospital. Not sitting at the computer reading scary statistics about spontaneous dissections. Having a little bit of time where I didn't have to remember that my life had changed forever and I could never go back to the way things used to be.

An author friend who'd met Kevin at a previous convention offered to introduce me, and since I get so tongue-tied around people, I accepted. While we waited for him to show up at his table, Tim and his wife Anna took me around and introduced me to some of the other Dragon*Con guests at the Walk of Fame: Peter Mayhew, Raelee Hill, Claudia Christian, and then... Kevin Sorbo.

After they introduced me, I bought a photo and got it autographed—then got incoherent and weepy. I think I managed to get out "Thanks... box set Hercules... helped me through a really scary time of my life... heart attack... freaked out... thanks for the entertainment and distraction..." He was really sweet and gave me a hug. I'm tearing up a little now just writing about it. I just wanted to make sure he knew that I appreciated him and the show and what it meant to me.

The con could have ended right after that, and I would have counted it as a win. But there was still another day's worth of entertainment, including having dinner with a friend and watching the Masquerade (a costume contest) from the comfort of our hotel room. One thing that Dragon*Con does is to have some of the larger, more popular events broadcast to the TVs in the host hotels, over a private channel called D*CTV (Dragon*Con TV). So sometimes you don't have to fight through the crowds to see your favorite events.

All in all, it was a great weekend full of memories that I'll carry with me for a lifetime.

Having heart disease doesn't mean you stop enjoying life; it means you take a few precautions and get out there and keep living.

Getting some press for women's heart disease

I'm in the February issue of Carolina Woman magazine:

http://www.carolinawoman.com/body02-10.php

In mid-January I sent out a press release to the various local media outlets, asking them to please do something for National Wear Red Day and American Heart Month, and included a bit of my own story.

This time I got two nibbles. Fingers crossed, there's going to be a story soon in the local daily paper with another young heart attack survivor and and me, and then a couple weeks ago Carolina Woman magazine called and said they wanted to run my press release as kind of a "letter to the editor." So of course I said great, and now there it is. :)

Of course if I'd known they were going to run it as-is with no chance to alter it, I would've put more in it about the three local WomenHeart support groups, but at least the website is in there.

In other heart-healthy news, I've just registered for the women-only Ramblin' Rose Triathlon.

Triangle Heart Walk, Sept. 27th

OK, last place I'm posting this. I'm only posting it once, but I'm posting it to 2 different FB accounts and 3 different blogs, so my apologies to those of you who see it multiple times. After today, I'm not going to mention it again, because I don't like asking for $.

This year, I'm participating in the Triangle Heart Walk, which is a fundraiser for the American Heart Association. If you're wondering why I'm doing this, see here (though most of you know the story).

I'm uncomfortable asking for money, so this is the only time I'm going to post the link:

My page for HeartWalk donations is here.

Annoyingly, the online form only seems to let people give in $25 increments; if you'd like to give a different amount, you'll need to print out the donation pdf and mail it--sorry about that. :/

Meanwhile, here are some heart disease stats from WomenHeart:

* Heart disease is the leading cause of death of American women, killing more than a quarter of them.

* Over 213,000 women die each year from heart attacks--five times as many women as breast cancer.

* More women than men die of heart disease each year.

* Women are less likely than men to receive appropriate treatment after a heart attack.

* Women account for only 27% of participants in all heart-related research studies.

* 23% of women and 18% of men will die within one year of a first recognized heart attack; 22-32% of female and 16-24% of male heart attack survivors will have another heart attack within five years.

* 12-25% of female and 7-22% of male heart attack survivors will be diagnosed with heart failure within five years.

* 34.9% of deaths in American women over the age of 20, or more than 450,000, are caused by cardiovascular disease each year.

* Over 166,000 women die each year of congestive heart failure, accounting for 56.8% of all heart failure deaths.